My partner and I are both retired physicians. Jim started having Parkinsonism symptoms (in retrospect) in early 2007, but was not diagnosed with probable LBD until early 2010. He originally was told he would progress rapidly (2 years) but has shown little progression. He is currently followed by a neurologist at the Oregon Health Sciences University dementia clinic, and has been taking Aricept for a year. He was recently started on levodopa/carbidopa. He regularly attends functional training sessions to maintain flexibility and strength. He does have some REM symptoms and naps several times daily. He needs some help with dressing and eating. We have a good group of friends who are very supportive, but I am the only family caregiver. Our once active social life has taken a big hit, however, since Jim's energy levels are not optimal.

I am also the sole family caregiver for my 90 year old mother with AD. She is in a retirement facility nearby, so I am confident that she is comfortable, and I do not have daily responsibilities for her care. But since these two individuals are my only family, it has been doubly hard to adapt to the changes occurring in our relationships.

I am glad this forum exists and will undoubtedly find it useful in the next few years.

Geof

Wed Nov 16, 2011 2:54 pm

mockturtle

Joined: Wed Dec 30, 2009 1:46 pmPosts: 3213Location: WA

Re: New to forum

Geof, welcome to the forum! Sounds like you have your hands full. I hope you will start planning for services in advance that you will surely need. You will find this forum very supportive. Glad you found us but ever so sorry you have to be here.

_________________Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Wed Nov 16, 2011 3:10 pm

JeanneG

Joined: Fri Dec 31, 2010 3:07 pmPosts: 1039Location: Minnesota

Re: New to forum

Geof, I'm sure this is not how you planned to spend your retirement, but I'm glad you are not trying to do this dual caregiving on top of maintaining a career. There are lots and lots of things that would be way more fun than the curtailed social life and other limitations imposed by your partner's illness, but I think you'll find that nothing would be more meaningful or rewarding.

I know I am not the first one to tell you this, and I know it is extremely hard to do, but do try to take some time for yourself. Maintain some of the social ties, by meeting with friends even if Jim cannot always join you. Some respite will make you a more effective caregiver, and prepare you better for a likely future on your own.

My husband is in his 9th year with LBD. I don't think that the life expectancy can be very accurately be predicted with this disease. We all just have to take one day at a time, and deal with what presents itself.

Welcome to the forum. I'm looking forward to your participation.

_________________Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012

Wed Nov 16, 2011 3:54 pm

empritchard

Joined: Mon Feb 14, 2011 10:22 pmPosts: 191Location: Portland, Or

Re: New to forum

Welcome Geof, it sounds like you have your hands full. My mom started having severe symptoms in August of 2010 and was diagnosed in Feb of this year. In retrospect she had been displaying symptoms ( sleep disturbances, hallucinations) for several years but they were so subtle that they weren't really bothersome. I look forward to your participation in the forums.Ellen

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